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Disabled Queer Poet Jillian Weise Upends Ableist Assumptions in Cyborg Detective

By Élan Young.

Among many things, Jillian Weise’s third collection of poetry, Cyborg Detective, published this month by BOA Editions, brings attention to ableism present within literature. As a writer of poetry, fiction, and nonfiction, as well as a social media performance artist, Weise is adept at switching between genres and mediums to make visible the richness of disabled poetics. Her work often confronts issues of access–within physical space and within art–and upends tired notions that disability is supposed to be made hidden or secret, or that disability and sexuality are mutually exclusive. New themes around sexuality have begun to take shape in this collection, as Weise recently came out as bisexual and polyamorous.

Her YouTube videos feature her alter ego, a heteronymn named Tipsy Tullivan, who dons a blonde wig, a Pepto pink wardrobe, and gives hilariously terrible, ableist advice to nondisabled writers in a sweet-as-can-be Southern accent. Weise’s channel, Tipsy Tullivan’s Tips for Writers, was born directly out of a protest at the 2016 Association of Writers & Writing Programs (AWP) conference when organizers rejected all panels on disability by disabled writers. She didn’t want to lecture them on something they should already know about–specifically the 1990 Americans with Disabilities Act–so she grabbed a wig and spoke to them from the stage and adopted the stance of a nondisabled perspective, figuring that would be the only perspective they would listen to anyway. Tipsy has since interviewed disabled poets from across the country and once made an appearance at The New York Times (NYT) editorial room wearing pink cat-eye shades.

In these new poems, Weise renders a powerful and sobering truth about the connection between visibility, vulnerability, and violence. For example, the poem “Attack List” is comprised entirely of news headlines about disabled women, and which continues open-ended on Twitter. She also manages to confront the literary establishment. She fearlessly takes on the canon in “Cathedrals,” where Weise re-imagines Raymond Carver’s famous short story of the same name and turns the tables on the narrative by giving the wife sexual agency, vocalizing the sexual tension between her and the Blind Man, and also giving him a name. It’s a reversal that both satisfying and triumphant.
While Weise’s work demands that nondisabled readers not look away from glaring examples of dominant narratives that subordinate, objectify, or co-opt disability for its own aims, her power as an artist is enough to turn nondisabled readers into allies.

This interview was conducted by Skype and email and has been edited and condensed for clarity.

3:AM: Can you explain for those who don’t know, what is a cyborg and how does this identity differ from simply being an amputee?

Jillian Weise: Sure. A cyborg’s body is technology. So I’m a cyborg because my leg is a computer. And here the tryborgs – my name for nondisabled people who theorize about cyborgs – will want to argue: “No, you have a fake leg.” There’s nothing fake about it. It’s my leg. And it’s my computerized part. If my leg starts buzzing, which it does occasionally, to communicate with me, and then dies, that changes my body and the trajectory of my day. So in essays for Granta (“Common Cyborg”) and the NYT (“Dawn of the Tryborg”), I return the word cyborg to disabled people. We were the first cyborgs, and we are the ones integrating our bodies with tech.

3:AM: You’ve mentioned before that after The Amputee’s Guide to Sex, you turned to fiction as a form of protection. Is this in some way what wigs and disguises allow as well?

JW: Yes. I turned away from poetry because it had invited strange men towards me. They were amputee fetishists and I guess they mistook my first book as a solicitation. Many assumed that I would be flattered by their advances. I was 26. I was shocked by their suggestion that I’d obviously hook up with them. Who else would I hook up with? Culture must have given them the impression that amputee women can’t find dates, but every amputee woman I know is partnered, has been partnered, has multiple partners, or doesn’t want a partner. So it was all confusing and a little scary. At the same time, I was having these bizarre interactions with the media. During one radio interview, the male host asked: “When did you lose your virginity?” and I thought, “Oh wow. I’m not a memoirist.”
I had been reading Bidart’s The Book of the Body, and he uses disabled speakers who have sex in the poems, and I imagined that I could also, as a poet, have access to writing disabled sexual speakers. But no, in 2007, I felt that was not possible. So I thought of poetry as inaccessible. I wanted out. I wrote the sci-fi novel The Colony, and it felt incredibly liberating and safe and playful. The wigs and disguises provide practical protection. I do not want to appear on amputee fetishist websites, as myself, without my consent. And I do not want to appear in the media, as myself, near a headline like, “Inspiring, Brave, Courageous Disabled Woman Overcomes All to Write Poetry.” I want access to art without being typecast. So I have given myself the accommodation of multiple selves.

3:AM: Speaking of Frank Bidart, he makes an appearance in the poem “Regulatory Capture” in which the speaker calls him and tries to have a conversation about his use of an amputee character who has to pay for sex. The speaker gets cut off and subjected to a monologue. You also have a poem called “10 Postcards to Marie Howe” that is an imagined correspondence with her over her characterization of disability in her poem “Star Market.” It too is like a one-way conversation. What would an ideal conversation with a nondisabled writer who has coopted disability be like, and do you think such a conversation is possible off of the page?

JW: I have had such a conversation, so I know it is possible. I had a conversation with a poet (I will protect the poet’s identity) who was using amputation as metaphor. The conversation was on the phone, and it had never occurred to the poet that amputation could be a really cool post-modern construct but at the expense of actual amputee readers. The poet had just not considered that there are amputee readers. It was tense. It was awkward. It wasn’t an argument, and we are still friends after that conversation.
I don’t know if that’s the ideal conversation. I think that it matters a lot that this poet and I are peers, whereas I’m definitely not a peer to Bidart or to Howe. They are my elders. They are highly esteemed poets, but it is a recollection of a conversation I had with him when I was 19. I had no business to be calling Bidart. He was very gracious to return the call. But the monologue was very, “Look, young lady, Shakespeare did this. I do this. This is what we do.” Of course, it’s the first amendment argument that you can do whatever you want in art, which I agree with, except I want access to it also, and I want more disabled voices and less exploitation of minority voices. The conversation with Bidart never moved off of capital A art and into, but why aren’t there any openly disabled poets in the Norton Anthology? My concern is an erasure of disabled poetics, while nondisabled poets profit from us.

3:AM: In another poem “Confession” you fearlessly adopt the perspective of a stalker of a disabled woman. The book trailer that BOA made uses distorted vocals for the man’s voice, and combined with the imagery, the effect is absolutely chilling, akin to a suspense horror film. Was this poem derived from that vulnerability you experienced from unwanted advances after your first book came out?

JW: It certainly germinated from unwanted advances from amputee fetishists who moved from the digital space into real life. They would appear at readings on occasion. And that was unnerving. And then I was stalked for three years locally. I took my time going to police. I kept thinking, “I don’t want to go to the police,” but when I did go to the police, that stalker stopped. But one of his things he would do was to stand by my car in the accessible parking and to stare at my face on the placard that hangs from my rearview mirror – so I was wanting to figure out how to write a poem that takes on a point of view but also petitions the state to change the law because I don’t think that our faces should be on the placard. It makes us vulnerable. In some way I felt that the state was complicit in the stalking because the state has this law that I must show my face on my placard and that provided the stalker with confirmation of where I was. I know it’s not all states. I imagine the state’s point of view is, “We have to make sure that disabled people are parking in the right spots and not giving their placard to someone else to use,” but that comes at the expense of safety. Nobody knows what to do about stalking. When I would ask a certain office, they would say, “Well nothing has happened.” So it then feels as though one is waiting for something to happen.

3:AM: Did you provide artistic direction for the video?

JW: I did all of the video. I learned Premier Pro. I used a Panasonic Lumix. I got a hotel room and brought my light boxes, but I thought I was making a video for a different poem. Then when I was looking at the footage, I was like, “Oh no, it’s for ‘Confession.’” It was very fun. The voice was empowering when I realized I could read the poem, and I didn’t need a man to read the poem. I could read the poem and manipulate the voice, and give the fear to the viewer. That was cathartic, which shocked me because I never thought I would be a poet who would say, “Poetry is cathartic,” but here I am. (laughter) It was important that the violence be implicit rather than explicit. There is something sensational about true crime that feels like a manual or an invitation to violence, and I wanted to avoid all of that but still give the fear.

3:AM: While the creation of multiple selves stemmed from the need to protect your identity and to feel safe within your art, you also clearly have quite a lot of fun with your performance as Tipsy Tullivan. Can you talk about how you manage to deftly move between playful satire with your performance as Tipsy and the honest, undisguised, and often searing tone achieved in your writing?

JW: I think Tipsy came out of exasperation and really frustration. I had been making a repetitive complaint to a writer’s conference about access, and I felt like a broken record. Then I just realized I had been doing wigs and disguises as a practical protection, and I realized I could do it for fun and for art and to play the role of the nondisabled Southern writer who has really good intentions. I just went for it. It was just so fun to do. But I had no idea of continuing. I’m four years into this performance that I started in 2016, which I thought was going to be one video just to make a point, and then I got into Alex Bag who is an artist and does different performances with various selves, and I read Pessoa and thought about the heteronym, and I was like “Oh, I’m just going to stick with this character for a while.”

It provides a lot of insider/outsider playfulness. Maybe I do it on the page, but I know how to do it in video now. Insiders are the disabled writers who are going to laugh and the outsiders are the nondisabled writers who are perhaps going to feel uncomfortable and awkward, and I love that duality. I feel so incredibly lucky because Tipsy started out as anguish and led to an interview with Ishmael Reed. If you had told me I would get to interview Ishmael Reed, I would have said, “Are you kidding, there is no way!” He is an idol to me. His work is incredible to me. I’m just incredibly lucky that that performance led me to have this conversation with Ishmael Reed about Cornel West, Amiri Baraka, and Gwendolyn Brooks, and what is Black Art and what does it mean to “Go Black” in his words. It is beyond my dreams for a fictional character on YouTube.

3:AM: Your work is often disruptive to a nondisabled worldview that either ignores disability, treats it as a curse, or seeks to claim disabled people as objects of inspiration, such as seen in inspiration porn. The idea that people with disabilities don’t need to be fixed and can have rich, fulfilling lives just as they are, is still in 2019 a fairly radical concept for some people. This is perhaps most notable around the topic of sexuality and people with disabilities having sexual agency. At what point did you realize that writing about disruptive topics like sexuality was an inherently political act?

JW: I don’t know when I realized it was an inherently political act, but I was raised in a Southern conservative purity culture background, so the fact that so much emphasis was placed on purity, definitely clued me into the power that was affiliate with sexuality. I was cognizant of not ever encountering disabled women anywhere in the media, except if we’d done something brave or inspiring or if something tragic happened to us. There also seemed to be power in the unwritten nature of a disabled woman’s life. Just daily life. I didn’t realize that it was going to be so radical to call the book The Amputee’s Guide to Sex. It was the title of a poem. It didn’t seem that radical to me. Maybe because I’m disabled from birth, so the disability was not new me. In the moment after that book, I was like, “Oh, this is political in ways I didn’t realize.” As I moved into activist communities and crip communities, I began to understand the politics of our sexualities. And I learned the violent history against our sexualities like eugenics and the nation’s policy of sterilizing disabled women.

3:AM: You have been publicly critical of rampant inaccessibility of physical spaces, whether universities, the AWP Writers Conference, or writing retreat centers, and your poetry also brings to light many cases of ableism rampant throughout literature. How does the notion of space – physical and literary – inform both your voice as a poet and as an activist?

JW: There was the year that disabled people couldn’t get in the actual door to AWP in D.C. because the button that we would push was broken, so you had an actual sense of being locked out. Then last year there was the actual space of Deaf and hard of hearing poets having no access to the majority of the conference at the same time as a Deaf poet, Ilya Kaminsky, is selling out his books. This Deaf poet is very popular, but Deaf poets don’t have access. So you have a strange moment. It seems warped or upside down land or something. But of course that isn’t limited to AWP. That’s as you said, colleges have this notion that these are historic buildings. We don’t have to install elevators. The building’s historicity is more important than the disabled person’s access. But as a cyborg, I think about space in a really liberatory way. I think about digital space. I think about coding as accommodation. I think about hacks, how to get in sideways, and in that sense it’s exciting.

3:AM: Regarding AWP, you have been very public about the challenges of getting them to respect the basic concerns of writers with disabilities. Have you ever received any acknowledgement from the organization that they were or are trying to change their writer gatherings to be more inclusive?

JW: They tried to buy me one year. They asked me to be on the selection committee for $500. I took great pleasure in writing that email and stealing from E.B. White who has this line from a similar situation where he says he must decline for secret reasons. But the reasons really aren’t secret. AWP knows that if I would have accepted their money that I would have been complicit in their organization, and then I wouldn’t have the capacity to critique them, so it was an easy choice. But it is of note that the only time they reached out was to offer me money and to bring me in rather than to say, “Dear Jillian, this is what we’re trying to do, we’ve made this this and this adjustments, would you please consider, whatever, you know.” There hasn’t ever been any attempt at dialogue.

3:AM: What is it like to attend the conference since you’ve been challenging them on access?

JW: Some core part of me must be an optimist because I would not protest if I weren’t an optimist, if I didn’t think eventually the conference would be a pleasant place for disabled people. It just isn’t right now. Attending the conference isn’t pleasant. It’s a lot of work. It’s a lot of emotional labor too because at this point, because I am out as Tipsy, other disabled writers will contact me to say, “Here’s where I’m at,” and then I’m listening to whatever horrible shit is happening at the conference, which I’m happy to be that point person for. But the reason I do it is because I believe in disabled and crip poetics, and I think that there are so many people doing cool work, and we all deserve a place at this conference. It’s beyond time. The best time is seeing other disabled folks at the conference and getting to spend time with them.

3:AM: You’ve mentioned poetry editors wanting to manipulate your poetic voice. How often does this happen, and what has been your response?

JW: It’s not exclusive to poetry editors. Now that I am writing nonfiction, I notice an elision between myself, as disabled person, and my writing, which I think some editors – not all! – mistake for disabled writing, that is, the writing needs to be fixed. The writing does not need to be fixed. The editors don’t recognize the moves because they’re not reading disabled and d/Deaf and neurodivergent people. So it seems as though some editors impose an ableist rubric on writing by the disabled person. The editors simply cannot recognize, yet, that it is an ableist rubric.

3:AM: Do you think your work is more threatening to nondisabled readers or nondisabled editors? And why?

JW: I don’t know. I have this theory that some readers and editors prefer a “triangulation” method. In psychology, triangulation is “a manipulation tactic where one person will not communicate directly with another person, instead using a third person to relay communication to the second, thus forming a triangle” (thank you, Wikipedia). In practice, this might be why books about disabled people garner far more reach than books by disabled people. I think of Ann Patchett’s biography of Lucy Grealy. We already had Grealy’s autobiography. Why did we need Patchett’s? Or I think of Judith Newman’s To Siri, With Love. What was the last nonfiction book by an #ActuallyAutistic person that made the NYT list?

3:AM: You’ve said that you do not believe in an able-bodied audience: “If the audience is larger than five people, then the audience certainly includes disabled and nondisabled people…” Just as you are a disability rights activist helping to create community for the disabled, your work helps open up space for people to claim the rejected or hidden parts of themselves that also fall into the category of disability. Is this part of your purpose or just an effect of your work?

JW: I don’t know the answer to the question, but I will say I changed. I don’t know when, but I started with the idea that it should only be the effect and never the purpose, and that was from academic training at the time, where disability isn’t relevant. My goodness, I was never in a class where a book of poetry was introduced and the teacher said, “This is a disabled poet.” Those were not words I ever encountered as a student, which made me internalize the notion that it’s not to be spoken of and not to be commented upon. And so it took me a long time to realize that was ableist and related to this notion that disability is bad, wrong, and in need of fixing.
More recently, it’s not like part of the purpose when I go in to write, but I am thinking futurely, like I want to be in third wave disability rights, and how do I want to get there. Well it’s not the poem that begins with the disclosure of my disability followed by some sort of reflection on that. That’s all first wave, in my mind. So I am sort of thinking what’s next. Let’s imagine all of the buildings have elevators and all of the doors open. Where do we go with the art after that? I don’t want to blame my poetic elders, but there are people who are secretly disabled, but we aren’t supposed to say anything about that, yet they’re disabled in their poems. I don’t want that for the next generation. I don’t want this shroud of secrecy. We all know they’re disabled, but we aren’t supposed to say it.

3:AM: What recommendations do you have for other disabled writers to nurture their poetic voice in a culture that seeks to erase disability?

JW: The first thing I would say is that to the person who is thinking, “I’m a disabled poet, but I don’t know if I want to claim or not,” is that you have this rich legacy that unfortunately you haven’t been taught. And it stretches back to Hephaestus, and it’s from the beginning of time. It’s a really awesome legacy and fills me with pride. So I think reading into that legacy and finding the poets who resonate with you who happen to be disabled – openly disabled – it’s going to be hard to find them because they’re not in the anthology. Josephine Miles, Hazel Hall, Larry Eigner, Constance Merritt, Laura Hershey. I wish I had that bibliography in 1999, and I didn’t have it.

3:AM: You recently discovered you are bisexual when you fell in love with a woman while engaged to your fiancé (a man) and have now formed a polyamorous relationship. How did/do you navigate that emotionally complex situation?

JW: Lots of open dialogue. A lot of honesty. I spent my twenties in ethically dubious situations because I wanted to write, first and foremost, and I wanted a career. I didn’t want to be in a traditional relationship, like what people call the relationship escalator, because I knew I would have to make too many sacrifices, so I would on occasion be somebody’s side chick – and I’m not proud of this – or like the FWB, or something like that. So when I got involved in a serious monogamous relationship with an awesome man, and then fell in love with this woman, I was like “Oh, polyamory. I’ve been sort of polyamorous always, except in really unethical affair model ways in my twenties and now I’m in my thirties, let’s try this legit. Let’s have everyone aware of the situation.” And the situation is two different relationships. It’s my relationship with this man and my relationship with this woman and they know each other, but this isn’t a threesome. This is not a triad.

I don’t think there’s room in our culture for a disabled woman to say, “Not only am I going to have one partner, I’m going to have two.” I don’t recognize that in stories, in the media, or on TV. It’s difficult enough to see a disabled woman in a relationship, let alone in an anarchic relationship structure. My work is an attempt to push back on all of that. It’s given me access to a queer identity that I’m sure was always present but I had not been aware of. Since there isn’t real representation of disabled sexuality in culture, it makes a lot of the cultural norms seem suspect to me. So I started questioning monogamy and wondering why I believed in it.
I think it was a shock to my fiancé, but it was a shock to me too. We both were thinking, “And so what does this mean?” I didn’t want to have an affair, but I was going to pursue this woman, so I just kind of said to my fiancé that I don’t know what this means, but let’s think about it. So that was kind of how it happened. I didn’t expect to fall in love with a woman at all. I’ve been with this person for two years at this point, and they are wonderful, and I’m still with my fiancé.

3:AM: Now that you’ve come out as queer, do you expect your writing to take on that subject more as well?

JW: The marriage poems in Cyborg Detective are related to this subject, but it’s not as explicit. “What Thou Lovest” in Cyborg Detective, is an example of my first queer as fuck poem. I wanted to figure out how to write a love poem that addresses two beloveds. And I also love the book of Philemon, which is the shortest book in the Bible. Everything that I learned about religion, I didn’t want to lose that in coming out. So I just stole from the book of Philemon, and I stole from Ezra Pound, who is super contentious, anti-Semitic, racist, a problematic poet from the 20th century, but also a disabled poet because of psychiatric disability. I’m not trying to rehabilitate Pound and Philemon, but for me that was my first moment when I was like “Oh, this poem is so queer.” But I’m open to readers thinking I’ve been writing queer poems for years and I just don’t know it.

Jillian Weise is a poet, performance artist and disability rights activist. Her book, Cyborg Detective, is just out from BOA Editions. She performs the fictional character of @Tipsy Tullivan on YouTube. You can find her on Twitter writing a continuous poem called “Attack List” (@AttackList). Her website is Jillian Weise.

Élan Young is a writer living in East Tennessee. Her work has appeared in Smithsonian Magazine, Knoxville Mercury, Smoky Mountain Living, and elsewhere. You can follow her at @YoungElan.

First published in 3:AM Magazine: Thursday, September 26th, 2019.